I'm writing this to assist other sufferers of b12 deficiency. I am taking a case to court of a b12 deficiency resulting in neurological damage which remained unrecognised because my previous deficiency was subsequently 'treated.' It has been a long and lonely road, the damage I suffered has never, up till recently, been acknowledged. I know I've made many mistakes in placing my trust in the hands of people who did not deserve it, but the upshot is this:

- You can prove that a b12 deficiency causes neurological damage irrespective of whether you have a diagnosis of pernicious anaemia or not. (if, of course, you have neuro damage)

- If you feel you have a complaint against your doctor, then take it up, but if you receive no satisfaction then don't follow the NHS procedure further.

- You must however, if your case is not time barred, participate in a pre-action protocol.

The biggie is getting an 'expert' to ascertain you have neuro damage. You need to have this. You do not need an expert, at the start, to state this neuro damage is as a result of a b12 deficiency. You simply need to establish that you have the damage.

I have no idea how my case is going to turn out but what I do know is that, up until recently, I received no practical help whatsoever.

A major aspect of the suffering b12 deficient patients go through is the mental anguish of not having their injuries recognised, of having them trivialised - and I intend to do my utmost to change all that.

It may end in tears, there have certainly been many along the way, but one thing is for certain, I will change things for the better.

It is unacceptable that patients are being forced to go to such lengths to get such a serious illness recognised, and I for certain wish things have never come this far - but now I'm there, well, we will see what mistakes I make and how others can learn from them. And one thing I am sure about is that I am going to get evidence into a court that means the injuries caused by b12 deficiency get noticed.

22 Replies

Thank you. And hopefully it will help others and go a long way to proving that b12 deficiency can be just as damaging as pernicious anaemia, that b12 deficiency can cause neurological damage or anaemia or dementia OR a combination of any of the three - and that neurological damage is progressive and can be permanent. Once those three factors are finally established then I hope we will all be in with a chance of getting the seriousness of this illness recognised.

2 years agoHidden

Hi Poppet,

I am so sorry to read that you have suffered that much that you feel a need to take this to court. It must be horrid for you, and the stress is in it self damaging for you.

I wish you the best out come possible and admire your courage to take things further hoping this will improve how PA is treated by the medical profession. Not all are bad, I have seen very good medics that were/ are supportive, I believe its a matter of luck who you see that may give you the support and or help you may need.

That does not mean I have not taken things in my own hands to help my self, a certain medic said to me she was tied to the (NHS/Nice/BNF/ local PCT) guidelines and could not officially alter from those, no matter how I do better on my self medicating regime say.

A Health minister once replied to one of my questions saying a GP can be expected to have to explain him/her self if they did not follow the BNF guidance.

Thank you. I think many people have suffered and continue to suffer. They simply are not getting permanent neurological injury resulting from a b12 deficiency identified or recognised. There are, I am sure you know, many reasons for this, or 'myths' if you will and hopefully this will go some way to ending those myths.

I'm sure there are many good doctors out there but there is much confliction. As you say a medic told you that they could not deviate from guidelines, but those who provide the guidelines state that they are simply guidelines and a doctor must use their own knowledge and judgement depending on individual cases. Since the neurological damage caused by a b12 deficiency in itself is progressive then the significance of the damage caused does indeed depend on individual circumstances and how severe the deficiency has been and the duration of it. Then that would bring us to the problem of how efficient the serum b12 test is in identifying the true level of a b12 deficiency - and I think we all know the anwer to that one.

2 years agoHidden

Yes you are right, I developed neurological damage during 5 years of conventional B12 treatment..its not to bad, but never going to go away either.

The unfortunate case is that for many, many people, whether untreated or undertreated, many injuries will never go away. In some cases those injuries are life changing and debillitating and if the correct remedial action is not taken then they can only get worse. How many patients for instance get referrals for physiotherapy compared to the number of patients told their symptoms are either 'all in the mind' or are due to another condition? Yet the injuries, even on this board, are plain to see - numbness to incontinence - all neurological injuries. Patients injured through a b12 deficiency have no less right to the correct medication and remedial assistance than someone who has been injured in an accident - and for many (even the majority) they are still not getting the correct medication and so the neurological degeneration continues.

Good for you! I'm sure you will lots of moral support from people on here and elsewhere, but I hope you also have physical support from people around you - not everyone does and it could get lonely! Whereabouts do you live (if you don't mind me asking)?

I'd rather not give any personal details because I wouldn't want to influence the court case - however in answer to your question about practical support - no, I have never been given any.

This is a problem for lots of people with injuries resulting from b12 deficiency. There is no doubt that verbal support goes a long way in boosting moral with a condition that rarely gets its significance recognised and most sufferers are greatly relieved when they discover that there are other people out there just like them. However that can only go so far and practical help becomes essential. To get practical help the significance of the illness needs to be recognised and this clearly is not the case. Medical practitioners are leaving injured patients to cope with their disabilities, and to self medicate in an effort to reverse or reduce symptoms. This is not an acceptable situation. The medical profession have to take responsibility for this - they have to bring their knowledge and skills up to date.

Thank you. I'm not actually concerned about proving the damage b12 deficiency does - I can do that without a shadow of a doubt. I can also prove why the standard maintenance dosage in the UK is for many patients, not working. The arguments that have been put forward so far as defences have no substance whatsoever. It is these factors that have the ability to influence the treatment of patients in the UK. On an individual basis, each case is dependant on several legal issues and the extent of liability has to be proven. What we can see from this is that one aspect of the case has the ability to affect all the patients in the UK - and in a positive fashion. Whether my case wins or loses is in fact to an extent irrelevant to other b12 deficient patients because so long as the first facts are proven doctors in the UK are going to have to sit up and take notice or risk being the next defendant.

I feel so disappointed that it has come to this but health and lives are being ruined and the situation has to change.

As you are so obviously aware, courts are horribly unpredictable. That you have limited aims and hopes for your case raises your chances of being successful on your own scale. A very well-balanced and thoughtful approach.

Again, thank you. My own case now I think is helped by not only expert testimony but also the fact the damage has become visible and, I believe can only get worse the longer the matter takes to get to the courts. Not exactly what I would have wished for in terms of physical evidence but in itself quite difficult to argue around. But as you say these things can be unpredicatable and points of law have to be met. Let's hope that Drs now start to realise that they too have something to lose by breaching duties of care and that very few people have to walk this path in the future and people who have been disabled by this illness are never again forced to try and perform normally because the societal and medical support they are, in law, entitled to, has been withheld.

I just want you to know how much I support you and wish you all the best. It's such a long and lonely road,especially if one's doctor is totally without understanding. You are obviously very articulate and have your wits about you. I often think of all those sufferers who have no computer, who don't know that the PAS exists,and just have to accept what their doctor tells them."It's all in your mind" etc I wish you all the very best. I will be thinking of you.

Let's hope that I can, somewhere along the line, destroy specific myths which exist about b12 deficiency.

Primarily I am hoping to inititate a situation in which Drs on either suspecting a b12 deficiency or identifying one, immediately recognise the serious neurological implications of the illness and act accordingly.

I am also setting out to prove the limitations of the serum b12 test and its insignificance in respect of indicating that a patient is treated and that remaining problems are 'all in the mind.'

The problems are multiple, not least I have realised, in that even patients themselves come from vastly different ends of the spectrum and have differing beliefs about the illness.

For example, a patient who has a b12 deficiency identified and treated when a major symptom is a sore tongue, does not recognise how a patient who has suffered partial paralysis is not restored to full health. To them a b12 deficiency is something that is treated quickly and easily.

Or you may have a patient who has suffered with primarily psychiatric symptoms and limited neurological ones who does not understand the patient whose illness has presented with severe neurological symptoms and limited psychiatric and whose neurological damage is permanent.

Even as patients, although many particular symptoms are present, the severity of those individual symptoms may differ dramatically depending on each individual situation. For many a resolution to those symptoms may never be found because the damage is permanent. This situation needs to be recognised and evidenced because the 'it's all in your mind' statement is not an acceptable statement or diagnosis to attribute to a patient who is suffering from neurological injury.

I think as well what I would like to add here is information regarding bringing clinical negligence cases against the NHS.

Some time ago I became aware that many NHS trusts advise that when a patient requests medical records it should be viewed as a potential claim and the records reviewed to assess the strength of a potential claim - weak to opening the floodgates of litigation.

My initial reaction to this discovery was one of shock. A defensive move by health authorities, I presumed.

I was wrong.

Rather than viewing claims for medical negligence as being a negative thing, the courts suggest that when such situations arise they may intitiate action which reduces negligent practices and improves the situation for others.

I believe it is covered for in pre-action protocol guidance that professionals review cases of potential complaint and assess the strength of a possible claim to assist in identifying any other cases that could arise. In short, if mistakes have been made then the procedure is designed to take remedial action to stop it happening again to other people.

So far from a claim being viewed as having negative effects on medical practice, the law views it as an opportunity (at each step of the way) for medical professionals to learn from it and to prevent it happening again.

...and for those of you out there that are thinking of bringing an action via a solicitor....

You need one that understands, or has the capacity to, that b12 is a metabolic disorder which has the ability to manifest as any one or a combination of the following:-

Dementia

Neurologic disease (nerve damage)

Anaemia.

Most think it is an anaemia only and a trivial illness which is easily identified and treated.

You need one that really understands the design and concept of the serum b12 test.

You need one that has connections to real experts in the field concerning neurology, gastroenterology and haematology.

You need one that understands how the damage you have been caused can affect your ability to work, your quality of life, continual pain and how b12 deficiency can be implicated in myriad other illnesses. And not least that injury can be compounded if you don't get the correct care and treatment.

Basically you need one that when you mention to them you suffered an untreated b12 deficiency sees the significance immediately. Just as they would for any other illness or accident where spinal cord injury or brain damage is implicated.

I spoke to one who spat out, "Why do you think the NHS should pay for an MRI for YOU?"

There's just too much ignorance to overcome with potential representatives who make comments such as that. Move on until and if, you find one who knows exactly why, as patients, we deserve MRIs.

Hopefully we will be able to put an end to the myth that b12 deficiency is a blood disorder that is quickly and easily treated.

So brave. Good for you. I went undiagnosed for years and still get recurring pins and needles, memory problems etc. My level at diagnosis was 75. I paid for a private MRI scan and some conduction tests but was told all was well - so guess it must be - yet I still get symptoms. Just offered an antidepressant instead which I declined. It is such a battle all the time and one grows weary.

MRIs are notriously unreliable in identifying damage caused by b12 deficiency - and I don't think any case has been recorded as showing damage after the patient has been having (the correct) treatment longer than 12 months - even if the patient is bedbound! Some nerve conduction tests also - although one test is better than the others. There is no one mechanical test that will do it. You need a good, well informed neurologist. In my case, because quite possibly I was never provided with any care, the damage now has become visible to the eye. The scientists can argue themselves blue in the face that this damage isn't visible on x or y or z test - but they can't deny what they can see!

You can also have nerve and muscle biopsies done to assess damage caused - but they are of course, invasive.

Then again, a century ago this is how they established what damage had been caused - to the dead. It seems a sad reflection that despite all the mechanics available to us, it looks like our only resort to 'prove' damage to medical professionals.